MJ-Question about OT Sorry, got kinda long! :)

Avatar for dogandcat99
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Registered: 02-28-2000
MJ-Question about OT Sorry, got kinda long! :)
3
Wed, 08-22-2012 - 1:01pm

MJ, remember when you said I should really go back to OT? Well, after I saw the dr. at the end of June, I agreed to give it another chance. I had my OT eval (why another one I don't know but I did) on Monday. She asked me my goals and what I expected. I told her I wanted to get down to what is really wrong with my hands and arms. I told her that I had gone in for an extra appointment last Thursday b/c my shoulder was super sore and I had tingling running up and down my left arm and my handds/thumbs were hurting much worse. The dr. said I had Carpal tunnel syndrome in the left arm and I feel like my right one is coming to that too. I asked the dr what to do about my hands thing and I felt like he wasn't addressing it well. All the guy said was that I have arthritis and the fibro.

He said he would send me back to the OT to help the pain, and gave me a pain med. (Sulendac). Well after I left there, I felt very confused, frustrated and I feel like I am not being heard, as he is not really explaining things, and I don't really know how much he is hearing since he has his back turned to me and is looking at the computer more than at me. Drives me bonkers. I already get frustrated being there b/c the front staff people are so incredibly rude I can't even stand it. Anyway, I agreed to try the OT again.

She asked me what my goals were and I told her that I wanted to figure out how to reduce this pain, and I wanted an explanation of what *really* is wrong. She did a bunch of tests and she did one where you hold on that metal thing that tests your strength. The first eval I was able to squeeze it even though it hurt, but this time I couldn't do it at all without horrible pain. Basically she said my ROM is pretty good, but I have muscle tightness and some worsening weakness.

I said I didn't really get what was wrong, and she gave me a brochure on Fibro, which, for the most part was stuff I already knew. I get the feeling that she really doesn't know what to do with me. She says heat is good for me but I've been saying that cold feels better b/c it's cooling down the warmth in my hands (like nerve pain).

So what the heck do I do? She did mention that I need to learn the fine line between over doing things and not overdoing things. I also mentioned that I can no longer sweep, mop, or vaccuum without massive pain now too. Holding dishes is really hard too--I feel like they are too heavy to lift.

I kind of get the feeling that I am not really welcome there and that I am a weird case and that they don't know what to do with me. I did talk to my foot dr. (b/c I ALWAYS get questions answered no matter what, and he is extremely knowledgeable and a fantastic dr.) and his take is that sometimes some people with arthritis will get worse very quickly and others it will take longer. I got the impression he thinks I don't have OA but a type of inflammatory arthritis (so far not RA), b/c I asked if this was related to the fibro, what explains the redness, warmth and inflammation and swelling in the beginning). It also seems like it's heading to the way my feet are...some pain at first that was noticeable but bearable, to one day completely unbearable, and constant and the ONLY thing that absolutely puts me out of pain is to do NOTHING. I mean flat out sit on the couch not reading, nothing. Maybe just watch tv.

I am going to see about getting a referral to the orthopedic clinic, and see what they say. Should I try a different specialist?

Avatar for michellejeanne
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Registered: 02-26-2000
Wed, 08-22-2012 - 4:55pm

I don't know Lauren, only that I did find that OT helped me and several people I know. It really IS about building strength and figuring out that fine line. You know it has taken me a long time to get my stamina back, for a long time I didn't do a lot. Immune diseases don't always have an explanation - I take all these meds for an active disease, and am still having a flare. Stress, changes in habits, or no trigger can make a flare happen.Also, meds can take a long time to kick in. See what they do, and give OT a chance.

I do know that when I am NOT active I tend to feel worse. Doing my old hand exercises has helped me some in the past weeks, some days where I don;t want to carry more than one plate at a time. It just helps me know where my strength is, and to test that line. Once upon a time I couldn't open my own bathroom door and put a rubber lever attachment on to turn it for me.

I also wonder - the front desk people may be rude (I have a feeling that being where you are, they get yelled at a lot by people who think they are entitled - not an excuse for their behavior, maybe just an explanation, The same thing happened a lot at a hospital I worked at once), however they may just be looking at your file, seeing that you've gone to this specialist and that, gave up on OT once, question everything they are telling you (Help me, but I prefer to ice rather than use heat) and they honestly have told you all they can about what your blood work, symptoms, etc. show. What else CAN they tell you? They can't make something up.

Work with her, try, do the exercises to whatever extent you can. You may have to choose that over vacuuming - but an exercise is going to take less effort than vacuuming will. I know when I vacuum when I shouldn't, I don't do a slack job, I do it the way I normally would when not hurting.  I know that when I do a new exercise, I will feel sore, but that I am not going to overdo it. And after a week or so the soreness of doing that exercise will decrease. I understand that ice feels good - laughing here, I normally like it WARM and complain when it gets cold or the AC is blowing on me, however when I am not feeling good, I go for the ice, cold air blowing on me etc. But when it comes to pain in my hands, feet, knees, ankles, elbows, wrists, heat really does help. It increases the blood flow to allow oxygen to the area, allows the blood stream to carry away any stress chemicals that ARE being produced by muscles in pain and that only add to the discomfort. Heat relaxes muscles so they are not producing more lactic acid, and it really does help my joints feel better.

Show them that you are willing to try, see what the results are. They may be willing to work with you longer or listen better if you are giving everything a fair shake, telling them what you have done, how it feels. Both of what you are dealing (fibro, OA, or an additional inflammatory issue) with are issues of the body attacking the body - if it wasn't such a mystery there would be more that could be done to stop it. I mean, other than the recent stress and sadness in my life which I know has made a difference, there is nothing else that I have been doing differently to cause this flare - and this started slowly a few weeks before my cousins death. It is what it is and I have to deal with it. More meds, exercises to keep my joints moving and the muscles strong to support them, especially when they hurt, more sleep, more water, a little less work or more breaks between, and watching my diet to stay a healthy weight and continue to an even more healthy weight.

I'm not an OT, so I can't be of more help. I hope I don;t sound preachy Lauren, though I think I am coming off that way. I don;t know what else to say?

Michelle
Avatar for michellejeanne
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Registered: 02-26-2000
Luaren, I had to run right after I posted, came back to read again. One thing that stands out is that is sounds like you are asking the OT what is causing your pain - I understand that you want to get to the bottom of it, but her job is to help you work with it, get stronger, figure out what you can do, what you need other tools for or adaptations you need to use in the things you do (I had quite a few once upon a time) so you CAN STILL DO those things, and what you absolutely cannot do.

I would also thing they did another assessment since it has been a while since you were in, and things could have changed. I think I remember this is a new person you are working with? That would also make sense - if you had been seeing one person who had recent files that could fill the new person in, Then I wouldn't imagine a new eval would be needed. In your case, you'd seen another Dr., so it really is like starting over.
Michelle
Avatar for dogandcat99
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Registered: 02-28-2000
Thu, 08-23-2012 - 1:26pm

Thank you MJ for your response. No you are not sounding preachy at all, you sound like a woman with a very strong maternal instinct and you would say the same things to your kids. :smileyhappy:

I took a lot of time to read over your posts so I could gather some thoughts. Yes, you are right--I was trying to ask the OT to explain what is wrong.Why? Because I don't feel like I've been heard by the rheumy and I thought maybe she would be able to explain the situation better. It's the same reason why I have been asking the foot dr these questions. At least from him, like I said, I get what I need answered, though I am still kind of confused.

As far as the rudeness goes...you should hear what I have experienced, but it basically boils down to communication and respect, 2 things I don't get from the office at all. It's almost like they want to be that way so we will give up and then we'll be one last patient they have to deal with. I have a hard time trusting these people because of that situation and when I am not being heard, it makes so nutty.

Part of me thinks I am not seeing the right doctor for this stuff, but maybe not. Maybe it's just that I haven't had enough time to do much about this issue, as it took 7 months to get in to see this guy and then the OT appointments have been few and far between, so I don't see the benefit. I also think that because I am not totally familiar with OT and how it works, I don't understand what is going on. I do get that the exercises might cause some pain in the beginning, but when they still hurt now and I've been doing them for 3 months (yes I was doing the ones she taught me the first time around) I wonder how much benefit I am getting.

I will take what you said, and try and give it a chance. I see the Dr. on September 5, and hopefully I can try and get him to explain things a bit better to me.

Again, thanks for responding and taking the time to do so. I can see why Karen thinks you are a great friend! :smileyhappy: